Children forced to try dangerous drug, says doctor

By Melissa Davey

27 August 2012 — 3:00am

CHILDREN with a severe brain disorder are being denied subsidies for a highly effective medication because the government insists they first try a riskier drug, say specialists who refuse to prescribe what they say is an outdated treatment.

Chris Seton,a paediatrician at the Children's Hospital at Westmead, said children with narcolepsy - a condition that causes them to fall asleep without warning, gives sudden bouts of muscle weakness and makes concentration difficult - could suffer life-threatening side effects, including psychosis, high blood pressure and heart palpitations, if they took the drug, dexamphetamine.

''He used to wake up and have so much energy, then crash and fall asleep by 9am'' ... Harrison White with his mother, Tracy. Mrs White says Harrison's condition improved almost immediately he took modafinil.Credit:Sahlan Hayes

The stimulant is the only therapy routinely subsidised for the condition through the Pharmaceutical Benefits Scheme.

''I will not risk a child suffering the potential side effects,'' Dr Seton said. ''Faced with a choice between the two drugs to treat narcolepsy, nobody on the planet would chose the amphetamine.''

Advertisement

Dr Seton said he once admitted a 13-year-old girl to hospital suffering psychosis after she took dexamphetamine before the new drug - modafinil - became available in 2002.

None of the 35 children he was treating for narcolepsy had been able to access modafinil at the subsidised rate because he and his colleagues refused to prescribe the cheaper amphetamines, Dr Seton said.

But subsidy rules require children and adults to first try dexamphetamine and be taken off it because of side effects or lack of response before becoming eligible for modafinil.

Dr Seton said the effects of taking dexamphetamine long-term were unknown but people with narcolepsy were likely to need medication for the rest of their lives. Only about 200 Australian children suffered narcolepsy, meaning the total cost to government would be trivial.

Based on the standard dose, the national bill would be about $700,000 a year.

One of Dr Seton's patients, Harrison White, 6, began using modafinil two months ago and his condition improved ''almost immediately'' his mother, Tracy White, said.

''He used to wake up and have so much energy, then crash and fall asleep by 9am,'' Mrs White, of Wattle Grove, said. ''He had no sense of danger and would run out onto roads, climb things and try to jump off.

''Now he can play with his siblings like a normal little boy and chaos no longer dictates our lives.''

The medication costs Mrs White $170 a month, which will increase as Harrison approaches the standard dose. The financial impact was particularly hard because Harrison needed frequent other treatments. She said previous appeals to the government to make the drug more accessible had failed.

''My husband is overseas with the navy working full-time, so we can continue to provide for Harrison and our other three children,'' Mrs White said.

''I will not force Harrison to take dexamphetamine just so he can become eligible for a drug that is working.''

A spokeswoman for the Department of Health and Ageing said the Pharmaceutical Benefits Advisory Committee accepted applications and supporting evidence to amend drug listings.